new abdominal and back pain... what the....

Billie Mimi

I was diagnosed with stage 4 OC in May of 2010. My CA 125 was somewhere in the 4000 range. I had 7 rounds of carbo/taxol and a complete hyst. and spleenectomy, followed by more chemo. Finally got my numbers down to about 103 and took a much needed holiday. My numbers began going up as soon as I stopped chemo.
I started chemo again in Aug. 2011 but after 2 rounds, developed an obstruction in the colon. More surgery and a colostomy later and we started back on chemo in Nov 2011 when my CA 125 was back up to 2847.
My numbers are trickling down and the last check showed 2532. Not great, but going the right direction. This time the chemo is cytoxin and carboplatin. I still have my hair... but lately and this is brand new... I have had abdominal pains like severe cramps and lower back pain too. Maybe it is because of scar tissue?? (I am hoping) but I have a PET scan on the 14th and we will see. Just wondered if anyone else had the pain I have been experiencing.
I stay so busy keeping everyone else from worrying about me I find that you guys are the only ones I can turn to and be really honest. I keep a strong, and I mean STRONG positive mental attitude but you know, pain is a game changer.
Forgive any typos and let me know what you think.
Bless your sweet heart for being there for me!
Billie Mimi

lovesanimals

Dear Billie Mimi
I've had pain but not sure it's what you're experiencing. I'm a stage 2b who has been NED since the end of chemo March 2011. I've had about eight episodes of abdominal pain since the week before Christmas. The pain is usually accompanied by what feels like gas noise and sometimes occurs after eating and a couple of times after a bowel movement. Each episode lasts between two and twelve hours and the last time I had the pain was about a week and a half ago. My last CA 125 was at 6 in November and a recent abdominal ultrasound and CT scan were normal and showed no bowel obstruction. My next step is a colonoscopy on Tuesday.
I hope your doctor can find the source of your pain. Hopefully the PET scan will give you some answers and I hope that whatever is causing your pain is easy to treat.
In the meantime, please take care.

Kelly

Billie Mimi

lovesanimals said:

Dear Billie Mimi
I've had pain but not sure it's what you're experiencing. I'm a stage 2b who has been NED since the end of chemo March 2011. I've had about eight episodes of abdominal pain since the week before Christmas. The pain is usually accompanied by what feels like gas noise and sometimes occurs after eating and a couple of times after a bowel movement. Each episode lasts between two and twelve hours and the last time I had the pain was about a week and a half ago. My last CA 125 was at 6 in November and a recent abdominal ultrasound and CT scan were normal and showed no bowel obstruction. My next step is a colonoscopy on Tuesday.
I hope your doctor can find the source of your pain. Hopefully the PET scan will give you some answers and I hope that whatever is causing your pain is easy to treat.
In the meantime, please take care.

Kelly

Thanks Kelly. It is always
Thanks Kelly. It is always good to hear from someone who's been there. It sounds like you are well on the road to recovery. I am so happy for you.
Before the bowel obstruction that I had, I did experience some pain but it was different. This is like cramps but without the ovaries! LOL!
I am sure the PET will show what ever is going on. I have my fingers and toes crossed.
If you haven't had a colonoscopy before, it can be pretty scary but let me tell you, it is a breeze. The prep before is the worse part, I promise. My husband and I did it together. Thank goodness we have two bathrooms!
You will be in my thoughts on Tuesday and I hope it all goes well for you too.
Thanks again for your post. Glad to know you're out there.
Take care,
Billie

karen1951

hi billie mimi...i am in the
hi billie mimi...i am in the same boat as you.....dx stage IV aug 2010...had a colostomy as part of my debulking surgery in sept 2010...i tell my doctor at every visit about pain in my adbomen...sometimes down low in the pelvis just like where the ovaries were....i am always told that it's scar tissue. i'll bet that's what they will tell you , too. it takes a long, long time to recover from the surgeries we've been thru. all the best to you....karen

lovesanimals

Billie Mimi said:

Thanks Kelly. It is always
Thanks Kelly. It is always good to hear from someone who's been there. It sounds like you are well on the road to recovery. I am so happy for you.
Before the bowel obstruction that I had, I did experience some pain but it was different. This is like cramps but without the ovaries! LOL!
I am sure the PET will show what ever is going on. I have my fingers and toes crossed.
If you haven't had a colonoscopy before, it can be pretty scary but let me tell you, it is a breeze. The prep before is the worse part, I promise. My husband and I did it together. Thank goodness we have two bathrooms!
You will be in my thoughts on Tuesday and I hope it all goes well for you too.
Thanks again for your post. Glad to know you're out there.
Take care,
Billie

Hi Billie
Thank you for sending your good thoughts and encouragement! You and I will be spending Valentine's Day the same way - getting tests done. I'm keeping my fingers and toes crossed for both of us.
You took the words right out of my mouth regarding the bathrooms. After going through surgery and chemo, I don't know how many times I said to my husband, "thank goodness we have two bathrooms"!
Sending you good thoughts and good vibes!

Kelly

lulu1010

karen1951 said:

hi billie mimi...i am in the
hi billie mimi...i am in the same boat as you.....dx stage IV aug 2010...had a colostomy as part of my debulking surgery in sept 2010...i tell my doctor at every visit about pain in my adbomen...sometimes down low in the pelvis just like where the ovaries were....i am always told that it's scar tissue. i'll bet that's what they will tell you , too. it takes a long, long time to recover from the surgeries we've been thru. all the best to you....karen

Hi Billie mimi
I finished chemo in May and had no abd pain for several months. I am in a trial so I get CT scans every three months. About 6 weeks after my last CT I started to have constipation and abdominal pain. They have told me they think it is scar tissue as well. I will be having another CT scan in two weeks and as you can imagine I am on pins and needles also. I sincerly hope your tests show that it is something as simple as scar tissue. I guess we worry about the worst every time something comes up but that is just the new norm for us. Wishing you the best! Hugs!

tml7470

Hi Billie,
I don't have
Hi Billie,

I don't have cancer but I'm caring for my mom and she's experiencing the same issue. She started having the abdominal pain after her 2nd surgery (removal of cancer from small intestines). Her back pain was so severe she couldn't do anything. We went back to the doctor and they did a procedure called a pain block. They paralyzed the nerves in her back that sends the signals of pain to her brain and it worked!The pain is gone for about three months.

Now she's experiencing pain in her abdomen as well. I would not wish this disease on anyone and you all are so brave and truly soldiers. I pray that the Lord will give you comfort and peace as you fight.

God bless you all!

Billie Mimi

tml7470 said:

Hi Billie,
I don't have
Hi Billie,

I don't have cancer but I'm caring for my mom and she's experiencing the same issue. She started having the abdominal pain after her 2nd surgery (removal of cancer from small intestines). Her back pain was so severe she couldn't do anything. We went back to the doctor and they did a procedure called a pain block. They paralyzed the nerves in her back that sends the signals of pain to her brain and it worked!The pain is gone for about three months.

Now she's experiencing pain in her abdomen as well. I would not wish this disease on anyone and you all are so brave and truly soldiers. I pray that the Lord will give you comfort and peace as you fight.

God bless you all!

Thanks so much
I really appreciate your comments and it has helped to take my mind off the pain. It isn't the severity of the pain but just wondering what it could be. With three posts talking about the possibility of just plain old scar tissue, my spirits have been lifted by each of you! I get a PET scan tomorrow and we will see.
Some days, when the pain is bad... and I just went through a really bad weekend with pain, fever,nausea, migraine and aches all over... I just had a good cry and told myself its just not worth it and that I was giving up. No more chemo, drugs, tests, needles, etc. But then I thought of you guys and my kids and grand kids, my adorable husband and I knew I had to keep the fight up.
I can't tell you how much I appreciate you all.
I will keep you posted on the test results.
Please keep those positive thoughts and prayers going for me and know that I will do the same for each of you and your families. Sometimes I think the families really get the brunt of dealing with it and I hate dragging mine through it but I am not quitting yet.

Much love to you all,
Billie Mimi

poopergirl14052

Billie Mimi said:

Thanks so much
I really appreciate your comments and it has helped to take my mind off the pain. It isn't the severity of the pain but just wondering what it could be. With three posts talking about the possibility of just plain old scar tissue, my spirits have been lifted by each of you! I get a PET scan tomorrow and we will see.
Some days, when the pain is bad... and I just went through a really bad weekend with pain, fever,nausea, migraine and aches all over... I just had a good cry and told myself its just not worth it and that I was giving up. No more chemo, drugs, tests, needles, etc. But then I thought of you guys and my kids and grand kids, my adorable husband and I knew I had to keep the fight up.
I can't tell you how much I appreciate you all.
I will keep you posted on the test results.
Please keep those positive thoughts and prayers going for me and know that I will do the same for each of you and your families. Sometimes I think the families really get the brunt of dealing with it and I hate dragging mine through it but I am not quitting yet.

Much love to you all,
Billie Mimi

I also have abdominal pain
My Doctor says it is probable scar tissue and adheisons ,but If have severe pain along with nausea and vomiting get to the ER fast.She said our insides are traumatized and moved around during surgery. I just try to get through the pain. I also have several incision hernias that cause pain too. No quitting allowed,,put on your big girl teal panties and give it all you got..val

Billie Mimi

poopergirl14052 said:

I also have abdominal pain
My Doctor says it is probable scar tissue and adheisons ,but If have severe pain along with nausea and vomiting get to the ER fast.She said our insides are traumatized and moved around during surgery. I just try to get through the pain. I also have several incision hernias that cause pain too. No quitting allowed,,put on your big girl teal panties and give it all you got..val

Update on the back and tummy pains
Hey there Poopergirl... and everyone out there... you are all my angels...
I had the PET scan (after a raging battle with the insurance company who was trying to deny it. As if this ordeal isn't a big enough PIA!)
The results showed scar tissue, yes, but also some new tumors, more cancer in the lymph nodes in the abdomen, additional lesions on the liver and an enlarged kidney that is holding fluid. The kidney is probably the source of the back pain they think and the tumor that had earlier caused the bowel obstruction, the cause of the abdominal pain for the most part. I got started on Topotecan and had it every day for 5 days. Not too bad and the side effects were minimal. Still having the pains but still working anyway. I am not dead yet! I have to just keep going. My oldest grand kids are coming for spring break and I am not going to be Sick Mimi!
They plan on doing the Topotecan again in about 2 weeks if my numbers come down as a result so we are sitting tight for now. I heard its an old chemo but my doc thinks it will get the numbers down.
Thanks for being there guys. I can't talk to people in my family like I can talk to you and it is such a relief to be able to just talk! You get it. And I get you too.
You are all in my prayers and thoughts.
All my love to you,
Billie Mimi

Mwee

Billie Mimi said:

Update on the back and tummy pains
Hey there Poopergirl... and everyone out there... you are all my angels...
I had the PET scan (after a raging battle with the insurance company who was trying to deny it. As if this ordeal isn't a big enough PIA!)
The results showed scar tissue, yes, but also some new tumors, more cancer in the lymph nodes in the abdomen, additional lesions on the liver and an enlarged kidney that is holding fluid. The kidney is probably the source of the back pain they think and the tumor that had earlier caused the bowel obstruction, the cause of the abdominal pain for the most part. I got started on Topotecan and had it every day for 5 days. Not too bad and the side effects were minimal. Still having the pains but still working anyway. I am not dead yet! I have to just keep going. My oldest grand kids are coming for spring break and I am not going to be Sick Mimi!
They plan on doing the Topotecan again in about 2 weeks if my numbers come down as a result so we are sitting tight for now. I heard its an old chemo but my doc thinks it will get the numbers down.
Thanks for being there guys. I can't talk to people in my family like I can talk to you and it is such a relief to be able to just talk! You get it. And I get you too.
You are all in my prayers and thoughts.
All my love to you,
Billie Mimi

Enjoy the kids
I've got my two oldest granddaughters coming to spend the night and I call it Vitamin Grandchildren! I hope your pain lessens and you have a fun time time with the kids. They help us realize why we're fighting so hard, don't they.
(((HUGS))) Maria

lovesanimals

Mwee said:

Enjoy the kids
I've got my two oldest granddaughters coming to spend the night and I call it Vitamin Grandchildren! I hope your pain lessens and you have a fun time time with the kids. They help us realize why we're fighting so hard, don't they.
(((HUGS))) Maria

Dear Billie
I'm praying that your numbers come down and that the chemo does the trick for you. Hope you have tons of fun with your grandkids!

Take care,
Kelly

lulu1010

lovesanimals said:

Dear Billie
I'm praying that your numbers come down and that the chemo does the trick for you. Hope you have tons of fun with your grandkids!

Take care,
Kelly

So much for scar tissue!
Sorry you are having to deal with so much. I too had a ct scan which showed 3 small nodules and I wonder if I had a PET scan if it would show more disease. I just seem too uncomfortable to just have little nodules. Anyway, I did get pain meds and will start chemo next week.

There are quite a few of us starting back on chemo. I am thankful for all of you and the support and listening ears you provide and a slice of humor when there is none. I pray for God's grace and healing power for all of us.

Hope you have a great weekend. I plan to do the best at enoying the weekend inspite of things!

Linda

lulu1010

lovesanimals said:

Dear Billie
I'm praying that your numbers come down and that the chemo does the trick for you. Hope you have tons of fun with your grandkids!

Take care,
Kelly

So much for scar tissue!
Sorry you are having to deal with so much. I too had a ct scan which showed 3 small nodules and I wonder if I had a PET scan if it would show more disease. I just seem too uncomfortable to just have little nodules. Anyway, I did get pain meds and will start chemo next week.

There are quite a few of us starting back on chemo. I am thankful for all of you and the support and listening ears you provide and a slice of humor when there is none. I pray for God's grace and healing power for all of us.

Hope you have a great weekend. I plan to do the best at enoying the weekend inspite of things!

Linda

Radioactive34

Billie Mimi said:

Update on the back and tummy pains
Hey there Poopergirl... and everyone out there... you are all my angels...
I had the PET scan (after a raging battle with the insurance company who was trying to deny it. As if this ordeal isn't a big enough PIA!)
The results showed scar tissue, yes, but also some new tumors, more cancer in the lymph nodes in the abdomen, additional lesions on the liver and an enlarged kidney that is holding fluid. The kidney is probably the source of the back pain they think and the tumor that had earlier caused the bowel obstruction, the cause of the abdominal pain for the most part. I got started on Topotecan and had it every day for 5 days. Not too bad and the side effects were minimal. Still having the pains but still working anyway. I am not dead yet! I have to just keep going. My oldest grand kids are coming for spring break and I am not going to be Sick Mimi!
They plan on doing the Topotecan again in about 2 weeks if my numbers come down as a result so we are sitting tight for now. I heard its an old chemo but my doc thinks it will get the numbers down.
Thanks for being there guys. I can't talk to people in my family like I can talk to you and it is such a relief to be able to just talk! You get it. And I get you too.
You are all in my prayers and thoughts.
All my love to you,
Billie Mimi

Wow...lots of things going
Wow...lots of things going on. I hope the topotecan brings things under control and you are able to interact with the grandkids. Hugs and Prayers...

Billie Mimi

Radioactive34 said:

Wow...lots of things going
Wow...lots of things going on. I hope the topotecan brings things under control and you are able to interact with the grandkids. Hugs and Prayers...

updating
Hello everyone and thank you so much for all the comments, prayers..love in general!
After taking the Topotican for 5 days straight and waiting 3 weeks, my numbers doubled. It was disappointing.
Truth is that the last three types of chemo didn't work at all and caused a lot of other nasty side effects. My doc tries to tell me that there is a benefit to the chemo but I don't see it. I told him I want to take a break and let me body recoup from all the crapola chemo does to it. My last PET scan showed lesions on the liver too. Doc says this is likely what will do me in.
Forgive me for just speaking frankly. I just think that if my days are numbered, I would rather spend them feeling well and not sick from chemo. I actually do feel really well. A little low on energy and the pains are depressing when I don't keep up with my meds properly.
I think right now that I am opting out of any future chemo.
My two oldest grandkids will be here in 9 days for a week. When they are gone, I will have one more heart to heart with my doc.

Do you guys ever feel this way?

Thanks again for all the lovin!!
Billie Mimi

lovesanimals

Billie Mimi said:

updating
Hello everyone and thank you so much for all the comments, prayers..love in general!
After taking the Topotican for 5 days straight and waiting 3 weeks, my numbers doubled. It was disappointing.
Truth is that the last three types of chemo didn't work at all and caused a lot of other nasty side effects. My doc tries to tell me that there is a benefit to the chemo but I don't see it. I told him I want to take a break and let me body recoup from all the crapola chemo does to it. My last PET scan showed lesions on the liver too. Doc says this is likely what will do me in.
Forgive me for just speaking frankly. I just think that if my days are numbered, I would rather spend them feeling well and not sick from chemo. I actually do feel really well. A little low on energy and the pains are depressing when I don't keep up with my meds properly.
I think right now that I am opting out of any future chemo.
My two oldest grandkids will be here in 9 days for a week. When they are gone, I will have one more heart to heart with my doc.

Do you guys ever feel this way?

Thanks again for all the lovin!!
Billie Mimi

Dear Billie Mimi
I'm so sorry that your numbers doubled and that the chemo didn't work the way you hoped. I have to tell you that my first reaction was, please don't give up on the chemo! However with all that you've gone through (which is a heck of a lot more than me), I don't blame you for feeling the way you do and for considering opting out of any more chemo. This is your body and certainly your decision. We're here to support you in whatever you decide. Please continue to check in with us.

Hugs and prayers,
Kelly

Tina Brown

Billie Mimi said:

Thanks so much
I really appreciate your comments and it has helped to take my mind off the pain. It isn't the severity of the pain but just wondering what it could be. With three posts talking about the possibility of just plain old scar tissue, my spirits have been lifted by each of you! I get a PET scan tomorrow and we will see.
Some days, when the pain is bad... and I just went through a really bad weekend with pain, fever,nausea, migraine and aches all over... I just had a good cry and told myself its just not worth it and that I was giving up. No more chemo, drugs, tests, needles, etc. But then I thought of you guys and my kids and grand kids, my adorable husband and I knew I had to keep the fight up.
I can't tell you how much I appreciate you all.
I will keep you posted on the test results.
Please keep those positive thoughts and prayers going for me and know that I will do the same for each of you and your families. Sometimes I think the families really get the brunt of dealing with it and I hate dragging mine through it but I am not quitting yet.

Much love to you all,
Billie Mimi

Abdominal pain
I have been reading these posts with interest. I too am experiencing pain in my abdomen. I am PPC stage 4 and my CA125 numbers are on the up (1,072) I have not had any surgery so I know mine isn't related to that. However I was very bloated and have recently found out I was constipated. Another point to make is that I have this thickening of the omentum around my bowel and the pain I have been experiencing was at its most excruitating when I was constipated and when I was trying to open my bowels.

I could manage the pain during the day but at night I used to take oramorph (oral morphine)

Our disease attaches itself to the outside of our bowels and can cause constipation as it is restricting the movement of the bowels.

I believe my pain stems from this and when the bowel is full of faeces it is stretching the bowel - which in turn is stretching the cancer cells. My pain is like a raw open wound, a bit like a mouth ulcer.

I'm not sure if this is striking a note with anyoine else.

However I now have my constipation under control and guess what ........... my pain has almost gone

I am due to go back on chemo a week on Monday so this will also hopefully resolve my problems.

Tina xxx

zamoraj3

Billie Mimi said:

updating
Hello everyone and thank you so much for all the comments, prayers..love in general!
After taking the Topotican for 5 days straight and waiting 3 weeks, my numbers doubled. It was disappointing.
Truth is that the last three types of chemo didn't work at all and caused a lot of other nasty side effects. My doc tries to tell me that there is a benefit to the chemo but I don't see it. I told him I want to take a break and let me body recoup from all the crapola chemo does to it. My last PET scan showed lesions on the liver too. Doc says this is likely what will do me in.
Forgive me for just speaking frankly. I just think that if my days are numbered, I would rather spend them feeling well and not sick from chemo. I actually do feel really well. A little low on energy and the pains are depressing when I don't keep up with my meds properly.
I think right now that I am opting out of any future chemo.
My two oldest grandkids will be here in 9 days for a week. When they are gone, I will have one more heart to heart with my doc.

Do you guys ever feel this way?

Thanks again for all the lovin!!
Billie Mimi

I think the chemo alone will kill me.
Your story sounds exactly like mine. When i started my chemo the first time my CA125 was 38 by the end of treatment it was 300. I refused to continue with chemo. I felt that there had to be more to help myself, and there is. I began the budwig diet. Cut out all sugars processed food. I alone lowered my CA125 to 250. Then i found this alternative hospital in Tijuana and now for the first time since this nightmare started i actually feel like im going to make it. Cuz even though i never had any kind of pain before i felt like the doctors were trying to convince me that i had cancer. Now i guess i kind of beleave it but only cuz im in pain as a result of the damage the chemo has done to me. I went from being a happy confident 30yr old that helped everyone to a crippled full of back pain hand & feet pain just keep me under the covers until my hair grew back hermit. But not anymore, what ever pain im in i push throw it. Sure i visit the ER a little more than others but cancer doesnt have me, i have it by the tail. LOL i got so excited i almost forgot to say take care of yourself with a raw food diet u will feel better i promise. Dont depend on the chemo at all depend on u. And its so so true we are what we eat.

undertreatment2012

Billie Mimi said:

updating
Hello everyone and thank you so much for all the comments, prayers..love in general!
After taking the Topotican for 5 days straight and waiting 3 weeks, my numbers doubled. It was disappointing.
Truth is that the last three types of chemo didn't work at all and caused a lot of other nasty side effects. My doc tries to tell me that there is a benefit to the chemo but I don't see it. I told him I want to take a break and let me body recoup from all the crapola chemo does to it. My last PET scan showed lesions on the liver too. Doc says this is likely what will do me in.
Forgive me for just speaking frankly. I just think that if my days are numbered, I would rather spend them feeling well and not sick from chemo. I actually do feel really well. A little low on energy and the pains are depressing when I don't keep up with my meds properly.
I think right now that I am opting out of any future chemo.
My two oldest grandkids will be here in 9 days for a week. When they are gone, I will have one more heart to heart with my doc.

Do you guys ever feel this way?

Thanks again for all the lovin!!
Billie Mimi

opting out
I have been reading your posts since I first signed on here. Not long ago, Newly diagnosed. I am AMAZED at the pain chemo can cause, I was not told this, nor did I bargain for it. Everyday it seems there is a new surprise. I have already decided, if the chemo is not working and numbers are not going in the right direction, I'm done. YOU have been through and done so much more than I am willing to even try. I admire you for that. However, no one can judge you on this decision. And I hope no one will judge me either, if that time comes. My thoughts are, control the pain, let me get as healthy as I can so I can enjoy the people in my life and do what I can, instead of letting them make me so much sicker than I may need to feel. I am praying for you. Please let us hear back from you. How things are going.
Side note. The Dr's are trained to do for us what they have been taught. Sometimes, they kick into to "this is how I was trained to help you" and the decision making on the part of the patient is not even talked about. Next thing you know you are swept up into the whirl of appointments, and everyone pushing you along through the process. At some point you do just have to sit with God and figure it all out. And not clinically, but inside yourself, spiritually. HUGS!!!